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Erythema Nodosum
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Location: Dallas, TX
Registered: 12-03-2012
Posts: 14
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Early on, I guess around 2000, I would get red, painful nodules on my leg (mainly below the knee but often in the inner thigh). It was dismissed as a non-issue. One Dr. took initiative to have it biopsied and confirmed it was Erythema Nodosum. It is most commonly found in women from excessive estrogen from contraceptives.
Another fine Dr. diagnosed me w/ low testosterone, checked the pineal gland and showed it was making enough Free TSH but the testies were not converting it properly into usable Testosterone.
So the question was, naturally, why and what can I do. He blamed it on "Bad Boys" and recommended a testosterone patch.
So my theory is the body is converting the free T into Estrogen instead of the good stuff.
I had been taking Testosterone Cypionate injections weekly which helped really well w/ keeping the sex drive active and my spirits up. Due to a national shortage of the drug, I switched to Testosterone Ethanate. Ethanate makes me feel more wanting to go chop wood and has increased hair growth on my belly and other places but has left the sex drive diminished(humm?).
After the first three months of the new Ethanate, my T-level was 1000+. However, between that test and my next test, I had an eruption of the Erythema nodosum and my next result was 525 (never missed a dose).
Without supplementation my lowest T-reading was 153.
I am waiting on genetic testing to confirm KD, and will probably stop the ejections but am concerned about running on No-T.

Any one else have red nodules erupt on the legs or run on a depleted testosterone count?
Location: Dallas, TX
Registered: 12-03-2012
Posts: 14
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Just got some labs back and the indicate low Alkaline Phosphatase(ALP). I reviewed my lab history and they have been consistantly in the low range. The interesting thing is low level Alp can be caused by estrogen replacement therapy. I am thinking it might be prudent to have my estrogen levels checked.
(just thinking out loud)I believe Aromatization
of testosterone to estrogen is happening.

Any one w/ low Alkaline Phosphatase(ALP) levels?
Picture of Dave Y
Location: Lebanon, Ohio
Registered: 09-24-2009
Posts: 20
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Sagemark
I have low testosterone levels but normal ALP readings and I do not have the other symptoms you mention, Erythema Nodosum.
A little over three years ago I had the DNA test to confirm KD. Before that test, my primary care physician (PCP) discovered I had very low levels of testosterone (well below the low end of the normal range) and I was put on an androgen topical gel treatment to raise my testosterone levels. After the KD diagonsis I consider dropping the androgen treatment since it appeared to be a significant health risk. However I was feeling much better and attributed much of that improvement to the androgen treatment.
In short I continue to use the androgen however that decision came about through discussions with my PCP, neurologist, endocrinologist, and physical therapist. The goal state is to raise my testosterone level to be within the low end of the normal range.
I have worked with the same physical therapist for over three years and with her help I have improved strength and stability. Those regular physical therapy sessions are part of the androgen treatment plan since she regularly test my muscle strength and stability reporting progress/problems to my doctors.
Registered: 12-08-2010
Posts: 10
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I have wondered about the role of estrogen as well. Here is a journal article about a man with KD-like symptoms with a 17 CAG repeat (no KD). He did have very high estrogen though.
http://www.ncbi.nlm.nih.gov/pubmed/18090681

Also, a recent study found that extra testosterone treatment did not accelerate the disease in mice:
http://www.ncbi.nlm.nih.gov/pubmed/21954065
Registered: 05-07-2007
Posts: 46
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I read the high estorgen/KD like symptoms paper - it appears that the individual is not in good condition (he has several chronic problems) that make any conclusions quite premature. His estrogen levels are high for men but not for women - that suggest to me that the high estrogen levels are not responsible for the neuromuscular symptoms in this patient as women with normal forms of the AR gene have high estrogen and do not show neuromuscular weakness.
Location: Dallas, TX
Registered: 12-03-2012
Posts: 14
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Ed, I was not making the case for estrogen causing damage, but bring up the point that there is an improper use of the available androgen's.

Dave, I agree with your thoughts on maintaining a level low end testosterone. I think running on empty would cause even greater health complications. I have been really concerned w/ stopping the injections.
Location: Cornwall. UK
Registered: 04-09-2012
Posts: 53
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Hi Bruce.
I have found three references to Dupuytrens Contracture and KD
If you Google: Pubmed 2633568
Familial case of late recessive X-linked Kennedys Spinal and.......
Will be at the top of the page.
This will take you straight to the report.
Below that report is a second link entitled: A familial case of Kennedys X-linked Bulbospinal Amyotrophy.
The third reference I found is on a European site called: Orphanet.
Google: ORPHA 481 an the article is easy to spot.
I just hope Im not wasting your time on this.
Many thanks. Eric.
Location: Cornwall. UK
Registered: 04-09-2012
Posts: 53
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[QUOTE]Originally posted by Eric:
Hi Bruce.
I have found three references to Dupuytrens Contracture and KD
If you Google: Pubmed 2633568
Familial case of late recessive X-linked Kennedys Spinal and.......
Will be at the top of the page.
This will take you straight to the report.
Below that report is a second link entitled: A familial case of Kennedys X-linked Bulbospinal Amyotrophy.
The third reference I found is on a European site called: Orphanet.
Google: ORPHA 481 an the article is easy to spot.
I just hope Im not wasting your time on this.
Many thanks. Eric.
Just realised I posted this in the wrong topic. My apopogies.
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